Please Help Fund a Bike for Blaze

This is Blaze:



He is 12 years old, is very friendly and outgoing, and is homeschooled because of developmental delays. He loves Legos, especially Lego Ninjago. He finds reading to be extremely difficult, but is great at following the picture directions that come with the Lego kits.



He loves Harry Potter, science fiction, dragons, pirates, and steampunk.



He, also, enjoys swimming, soccer, air hockey, video games, tea parties, crazy dancing, and dressing up in costumes.

For any of you who have been following my blog for awhile, you probably have realized that my son, Blaze, is entertaining. He has a great imagination and constantly makes us laugh. He has also had some pretty frightening health challenges and we are very lucky that things have turned out as well as they have.

Blaze has epilepsy. His first seizure happened three days after he was given the chicken pox vaccine, just after his first birthday. The doctor had warned me, at the time of the shot, that three days later, around noon, he would probably start running a fever, so I wasn't surprised when the daycare called to tell me that he had a fever. By the time I drove him home, the seizure had started. I carried him into the hospital emergency room and he was instantly removed from my arms and whisked off to treatment, but the seizure lasted over a half an hour. The seizure did not act like a febrile seizure (one caused by a fever), because it affected just one side of his body and his fever was not that high, but after keeping him in the hospital for a week, the doctors still could not figure out what had caused the seizure. They did not believe that the chicken pox vaccine had cause it, only that it had worked as a trigger for something that was waiting to happen anyway.

He has had several seizures since then. They are not very frequent, going up to two years between the last one and the one before, but some have been severe enough to land him in the hospital for a few days.

Both of Blaze's sisters started walking at a year old, but Blaze did not. He walked while holding onto push toys, but dragged his right foot, which also turned to the side. I took him to a specialist, who told me that all I had to do was have him wear high-top baby shoes to straighten his right foot. I did that. His foot turned forward, but he then began toe-walking on the right side.

It took an MRI, when he was 3 years old, to discover that both the seizures and walking issues were caused by cerebral palsy. There is a small uneven line that showed up on the left side of the brain on the MRI, a cleft where nothing had grown, probably formed during the first trimester of pregnancy.

The cerebral palsy effects the right side of his body, making balancing on a 2-wheeled bike, even one with training wheels, impossible. When he was younger, he had a "big wheel" that he loved, but he is now 12 years old and is too big for that.

We cannot afford a bicycle built to accommodate a special needs child on our own and had signed up for a contest to try to win one. In order to even be entered in the contest, the child had to have 50 people nominate them. I appealed to the Florida steampunk community for help and they came through in a big way. Within 3 hours, he had all the nominations he needed. I couldn't have been more pleased and grateful. When he didn't win the drawing for the bike, I thanked everyone and said we'd just try again next year. That was when I heard from The Airship Annabel Lee's founder Graesyn Fenix. The nonprofit was just getting started and wanted to know if the bicycle could be their first project. I am so excited by this! 

The Airship Annabel Lee is collecting both monetary donations and donations of handcrafted steampunk goods to be auctioned off.

For more information about how to help, contact Graesyn Fenix at:

https://www.facebook.com/graesyn.fenix

or donate at:
https://fundrazr.com/campaigns/cXdW7

Thank you for any help you can give!

The music video that Blaze made for a DIY.org project:

The blooper reel:

P.S.

If any of you see us at Dragon*Con this year, or at any of the Florida steampunk events, please don't say anything to Blaze about the bicycle. He knows nothing about this. If enough funds are raised, it will be a Christmas surprise for him.

Leg Brace

We went to pick up Blaze's new leg brace this morning and then had to buy new shoes that the brace would fit into. It's not the style of brace that we thought Blaze was getting, but he's pretty excited, so far, because it's more sleek and high tech looking than the clear plastic brace, covered in skateboard prints that we thought he was getting. Right now, he thinks this looks like a fancy mechanical leg. I just hope his imagination holds up to any comments he gets from the neighbor children. He has headed outside to take his first walk in the brace.





He only has to wear it for two hours today, but the time is supposed to lengthen as he gets used to it.

Average

I was so happy when the speech therapist came out to the waiting room, after administering half of her latest assessment of Blaze, and told me that his vocabulary and understanding of single words was average for his age. Being told that your child is average may not seem like a big deal, but it is for us.

For years now, we have been told by various therapists, administering many tests, that Blaze is about two years behind developmentally, straight across the board. Since this amount of delay has seemed very consistent, my pat answer to this is that, "that's fine, because there will come an age, when a two years' difference no longer matters."

After his first grand mal seizure, around the time of his first birthday, the anti-seizure medication prescribed for Blaze was Phenobarbital, which he turned out to be allergic to. When I complained that he was developing large, red hives after each dose, I was told to give him Benadryl every time he took the Phenobarbital. Benadryl made him sleepy. Taking both drugs twice a day, meant he was sleeping his life away at a very important time developmentally. This only stopped when I asked the doctor to take him off Phenobarbital, stating that he had only had one seizure and, at that time, we didn't know if he would ever have another one, since the hospital had not uncovered a cause for that one. I was never told that there were alternative drugs, I was only told that I would have to sign a paper saying that I took full responsibility if another seizure occurred. It was 9 months later that he had another seizure, but that was 9 months that he was alert and learning new skills, like how to walk. During that time we also moved and found a new doctor, who was able to prescribe safer medicine to control the seizures.

Each seizure since then, has caused some minor setbacks, but the seizures have become less frequent as he's gotten older. He has now been over a year seizure free. He will always have to be medicated, because when he was 3 years old, an MRI revealed a permanent cleft ( a tiny, wiggly line, where nothing grew) near the speech center of his brain, on the left side.
For years, we said that he talked like Yoda. His syntax was all wrong for English. He had trouble with pronouns, as well. All pronouns were male until after kindergarten. He would also make up new ways of saying things, that would then become hard to break speech habits, like saying "us all" instead of "we". This took YEARS to fix. The only one of these deviations from normal speech that I thought was cute, was the summer ( when he was about 4) when everything he didn't like was described as being broken. I started writing down some of the funnier ones and ended up with a list that included, "broken breakfast" and "broken sister".

Blaze has overcome a lot of issues, both physical and speech related, over the years. I could never express the amount of gratitude I feel for the wonderful therapists who have helped him to walk and run like a "normal" child ( in nursery school, he used to come home crying because he couldn't run as fast as the other boys) and to express himself verbally in a way that other people can understand. He has such a creative imagination, I am so happy that he has the words and sentence structure needed to share those ideas with other people.

Don't get me wrong, it's not perfect. He still needs to work on his speech. For instance, Thursday, he told his therapist, "She don't have a son." He also sometime still says "no" when it should be "not", and leaves off the first sounds in many words. But, none of this takes away the achievement of going from 1 1/2 to 2 years behind in everything, to having an average vocabulary for a ten year old.

Average is wonderful!

What we've been up to

I know it's been a few days since I posted anything. It's not that we have fallen off the face of the Earth, it's just that Blaze's schedule has been keeping us very busy. He has joined a Special Olympic swimming team, which practices 4 mornings a week and two afternoons (it will be less once school starts). He won't be competing this year, because he still needs to improve his skills and endurance, but the coach believes that by next year he'll be ready.







Swimming is not Blaze's only scheduled activity, he still has therapies to go to. He has speech twice a week and physical therapy once a week. For physical therapy they've been doing serial casting on his right ankle to stretch his Achilles tendon. Yesterday he got the 4th cast in the series.

The way this works is they flex his foot as far as they can and make a cast in the position. Then the cast is split up both sides so it can be removed and Velcro is added, so that it can be wrapped back around Blaze's leg at night.



He only wears it at night and he's been really good about reminding me to put it on him.

If he has gained range after 2 weeks of wearing a cast, he will get a new one that flexes his foot back more, until he achieves a normal range of movement in that ankle.

Blazes Breakthrough Summer

Blaze has been gaining confidence by trying and succeeding at so many new things. One of the directors of Noah's Endeavor has been referring to this as "Blaze's breakthrough year".

This is the child who was afraid to put his face in the water last year at swimming class. After being able to swim for only three weeks, he is happily jumping off the high-dive.



After I stopped cringing every time I watched him climb up there, I got a real kick out of watching him put his hands together in a diving pose, and then jump feet first.

This is also the child who was afraid of the slide at the pool last year. Now, the promise of the slide each Thursday, motivates him to work hard the rest of the week.



This past Thursday he attended his first dance. It was not the first dance he had been invited to, but it was the first one he agreed to go to. He was truly excited to go. There wasn't a shy bone in his body when we got there. As soon as the music started playing, he was showing off some pretty wild dance moves to a couple college girls.

Everyone had such a great time at the dance. that they've decided to have another one next Thursday.





How low can you go?


The Electric Slide

Schooling Never Really Ends

One of the many obstacles that Blaze has to overcome, is a reading disability. Our progress is very slow in this direction, but it is happening. However, if we took the entire summer off, the way the schools do, we would loose what we have gained. I have continued to have him do one page a day in a simple phonics workbook and I found an app. for the Ipod that was only 99 cents and has over 300 sight word flash cards. The educational Ipod apps mean that Blaze can be learning new words while we're driving to swimming class, or his various appointments.

When we went to Jacksonville, a couple days ago, to pick up the newly repaired desktop computer, we went to the Anthropologie store and Blaze saw this children's cookbook that he really wanted.



The deal I've made with him is that I will buy the cookbook, if he can read all of the words on that sight word program without assistance.

Corner View: Favorite Hang Out

This week's topic for Corner View is "Favorite Hang out". At first I didn't think there was anything I could post. I don't have a special restaurant or coffee shop where I go to hang out with friends, but then I realized I do have a favorite hang out, it's just a bit unusual to think of it that way. Once a week I spend two hours sitting in the waiting room at Shands Rehab for Kids , talking to other parents and grandparents while our children are in therapy. It's a great chance for people with special needs children to talk about our kids, learn from each other, and vent about schools, work, and family. The waiting room is like therapy for the parents. Until just recently, I had been spending about 5 hours every week in that waiting room ( Blaze's speech therapist recently left and he is on a waiting list for a new one), so that really is my hang out. When I'm not talking, which isn't often, I also sit there and read or hand-sew.

To hang out with more Corner View Participants, please visit Spain Daily

Our Odyssey to the Greek Festival

We just returned from a weekend in St. Augustine. I love going to St. Augustine. There is always something happening there and things we haven't seen yet.

This time we went because there was a Greek Festival.

For the past week I've been reading Mary Pope Osborne's version of the Odyssey to Blaze as his bedtime story. This re-write of Homer's epic poem is for early readers and is slit into 6 small chapter books. We have just started book 3.









Just like Odysseus, our journey to see the Greeks was full of both perils and joys ( I am only being a little over-dramatic here).

Saturday, on the way to St. Augustine we stopped for gas in the little town of Hastings and the car wouldn't start again. It was about a half an hour wait in the hot car before a tow truck arrived to jump start us, but I am so grateful that we have AAA. That half hour is nothing compared to what it would have been like without AAA. We then had to go buy a new car battery.
We arrived at the Greek festival late in the afternoon, just as it started raining and all the venders were covering their tables with plastic sheets. We decided not to go to the festival until Sunday and instead went to St. George St., the old town shopping street.
Then some really good things happened. It turned out that the Colonial Spanish Quarter Living History Museum was having a special weekend. Admission for adults was only $1 and children were free, but since most of the people had left when the rain started, they let us in for free.
After spending a little time at the museum and deciding to return there on Sunday, as well, we had a very nice dinner at the Columbia Restaurant.
We hadn't walked far from the restaurant, after dinner, when Blaze started moving his head around in an odd way and staggering around instead of walking in a straight line. We think he had a petit-mal seizure. He said his right eye was spinning. His seizures always affect only the right side of his body, but it's been over a year since the last one. It is also unusual for him to have a small seizure that we can observe. Most of his seizures in the past have been grand-mal that end in vomiting and then falling into a deep sleep. This one wasn't like that. He sat down and I had him tracking my finger with just his eyes to be sure he could focus ( during his previous seizures, his eyes have locked to the right and he can't move them) and he said that helped his eye to stop spinning. When he said he was o.k., he was able to walk back to the hotel on his own.

The next morning Blaze said he felt fine, except his right eye was still red and watery.

We had a wonderful day in St. Augustine Sunday and had a blessedly uneventful trip home. I'll post pictures tomorrow.

Feeling Spacey

No one is feeling that well today. DH and I started getting sick almost as soon as we returned from our weekend trip, but it didn't hit Blaze until today. Now, his nose is running non-stop and I kept him home from therapy today (he was supposed to be in the pool for physical therapy today).
It's not so bad that we're confined to bed or anything, we are just all sneezing and don't feel like eating. It's also making our heads feel cloudy. DH keeps repeating that he "has the stupid".


As long as we are on the subject of feeling spacey, I'll show you what I did to our old computer bag this week.

We have Dell computer bag, because we picked it up from the free pile in our apartment complex's laundry room, but we have an Mac laptop.



DH didn't like the Dell symbol on the bag, so he came up with this idea while we were at the Space Center and I sewed the patch onto the bag.

A Weekend Away

We have a wedding to go to in Orlando on Saturday. DH's niece is getting married Saturday evening, but since DH and I don't have to work on Friday, we decided to drive down there early and spend all day Friday at Epcot. I'm very excited because Epcot is having their Flower and Garden Festival.

Even though Orlando is only about a two hour drive from here, we don't get down there very often. This will only be the third trip to a Disney Park for Blaze and the fourth trip for me (my mom took my sister and me to Disney World when I was 10 or 11). We went to The Magic Kingdom when Blaze was 4 years old and then to Epcot last year with all three children. DH grew up in Orlando, so he's been to all these places lots of times.

The Disney Curse:

When Blaze was 4, we took him to The Magic Kingdom, which is a great place to take any 4 year old who likes Disney movies. He loved it, but was exhausted at the end of the day and probably a little dehydrated. On the bus on the way back to the hotel in the evening, he had a seizure and threw up into a plastic shopping bag.

Last year, when we took all the kids to Epcot, Blaze threw up in the car on the way down to Orlando. Then, that evening, he had a seizure in the hotel room.

Blaze is epileptic, but he doesn't have seizures very often. They are usually several months apart.
I'm just hoping this trip to Orlando will be the one that stops this Disney/Seizure connection in all of our minds.


I have to work this morning, but as soon as I get home, we're leaving. We're spending two nights in a hotel that has high speed wireless internet, so I'm taking the laptop and if I have time I'll post pictures. Saturday night, DH's sister has booked a room for us at the bed and breakfast where the wedding reception is being held.

To prepare for this trip, DH and Blaze went out to get their hair cut last night. So, here is the new, temporarily tame, look on Blaze:

A Developmental Milestone

Blaze called me into his room last night to see what he had made and I was so excited that I ran to get the camera and took a picture of it. He had built a fort for his clothespin soldiers, using the wooden blocks.

O.K., I know most of the people reading this aren't going to understand why this is a big deal, so let me explain. This is the first structure with four walls that Blaze has ever built. He plays with his blocks all the time, but his usual block creations are either towers that he can throw things at, to knock them down, or roads for his toy cars to drive on. The idea of constructing a building is completely new to him.

For those of you who don't know, Blaze has mild Cerebral Palsy and Epilepsy. The doctors believe that something went wrong during the first trimester of my pregnancy with him, that caused a thin wiggly cleft on the left side of his brain (the technical term for this condition is schizencephalic cleft), near the speech center. This injury affects the use of the right side of his body, so he is very left handed. His right leg used to be extremely weak, but years of therapy have helped a lot, so that most people never notice anymore. He has a wonderful group of therapists who have worked with him since he was three years old and we've seen tremendous progress, but he's still developmentally delayed.

Pinch Pot and Fire Ants

DH left early yesterday morning for an Archeology conference in North Carolina, where he is doing a presentation about Kingsley Plantation. He won't be back until Sunday and we really miss him, but he's been working very hard to get this presentation ready and the PowerPoint show he made looks terrific.

Blaze and I have continued learning about Southwestern Indians and, Tuesday, Blaze learned to make a "pinch pot" out of clay.





Then I broke off a piece of corn cob and DH showed him how to roll the corn cob across the pot to make a textured design.



He also wrote his name and the year in the bottom of the pot using a tooth pick.



I was going to let him paint the pot yesterday, but things just got a bit crazy and that didn't happen. Yesterday afternoon Blaze went out to play. I heard him screaming and ran outside to find him jumping up and down screaming, crying, and clawing at his back. He had been sitting next to a hill of fire ants and they had swarmed him. Mostly they had gotten inside the waistband of his pants, but he also has lots of bites on his feet, hands and neck.
He feels o.k. now, but the blisters look terrible. He really looks like he's suffering from some horrible pox.

This is his lower back: